Our daughter Hailey was diagnosed with Leukodystrophy in 2011, a terminal brain disease. There is no cure or treatment. In January of 2015 she had a Pacemaker placed. There are medical bills, prescriptions not covered by insurance, Dr. Appointments out of state, and surprise expenses that would take a toll on any family. One way to share our story is to share jewelry we created together. There are many places we want to take her.
Each necklace signifies a Hug for Hailey.

Saturday, October 20, 2012

Our Story Continues...Enjoy the last weeks of the Summer

So after hearing pretty much the worst news ever, we decide that we need Hailey time. Just Hailey, Josh and me. Before leaving Salt Lake and heading back home we take Hailey to Hogle Zoo for an afternoon before we start back to Las Vegas.

I LOVE THIS PICTURE!!!

Hailey was smitten with the "Baby" Elephant

Time for some music.

Waiting for the Polar Bear

Making friends with the Brown Bear.

Up Close with the Tigers.

I love how it looks like she was standing right next to Mr. Tiger.

It was a warm day, but we really enjoyed having that time together. Laughing at the animals and riding the train. After a whole afternoon with the animals we packed up and headed back to Las Vegas. We were going to do the trip in 2 days anyway so we weren't in any hurry to leave. We really enjoyed what we had seen while in Salt Lake even if we weren't in the best of spirits.

We drove by the campus one last time before heading out. Some how I knew we'd be back. (Just not as soon as a month and a half later)

***

So we now only have a month left until school starts and we have 2 more "vacations" we want to squeeze in before then. First up is a trip to California. My older sister, Hailey's Aunt Pam, lives in California with her husband and 4 kids. They invited us to go up with her as she was going to be driving to California from Las Vegas.

On our way to Aunt Pam's house we stop at a working farm where there was a petting zoo and fresh fruits and veggies. There was also this HUGE pit filled with corn feed. The kids had no reservations about jumping right in and feeling the corn with their bare feet.

The rest of the car ride was pretty quiet. Hailey and her cousin fell asleep holding hands and watching The Little Mermaid. Ariel is one of Hailey's new favorite princesses.

We had loads of fun in California. Hailey had her cousins to play with and really enjoyed swimming in Aunt Pam's Pool.

We even had a lunch date at BJ's where we chatted and enjoyed the sun outside. It was so odd to me to be outside in the sun in August and it not be 110 degrees out.

Now while things are going great there is something in me that is worrying me. Hailey had been potty trained and re-trained several times. In California she started wetting her pants. At first I was in denial thinking that she's just having too much fun with her cousins that she's to busy to stop and go potty. At least that's what I wanted the case to be. Remember in January she was wetting her pants before an episode...
My sister did get Hailey to poop in her potty by telling Hailey that she was the poo-poo fairy and if Hailey poops in the potty the poo-poo fairy will bring a special present. This opportunity was too good for Hailey to pass up because lo and behold she poops in the potty. That evening a new friendship was made. Meet Lambie:

Lambie was instantly loved on by Hailey, and Lambie will play a big part in Hailey's life in a few weeks.

Look at that happy face! Being with her cousin and having Lambie all in the same moment was pure bliss.
So I was able to put my fear aside for the remaining time we were there. After we got home I did mention my concerns to Josh and said that I was going to retrain her to potty but in the in between times and during the night we needed Hailey to go back into "diapers" or training pants. I was worried after about a full week of being at home and Hailey going from time to time diapers to full time diapers. It just wasn't working. She wasn't telling me when she had to go. Then another little bump in the road was that when Hailey is not having an episode she's a normal little kid that can walk, run, talk, and open doors. Our doors have round handles that you have to turn the knob to open. One morning I heard her attempting to open the door in her room but then eventually end up calling for help. She wasn't able to open the doors. My anxiety started to surface. Josh went straight to changing the door knob handles to levers so that Hailey could use them.

We received paperwork to have Hailey tested for Vanishing White Matter Disease. It was something that the neurologist set up and we agreed to have it done. If it was going to confirm anything we wanted to know. Maybe there would be a medical study and we would be able to get Hailey into that if that was the type of leukodystrophy she had.
It was time for the first day back to school. I am sure I was as nervous as most parents who put their 4 year olds on a bus and waves good bye. This was Hailey's second year of school and I trust Hailey's teacher that she'll makes sure that Hailey is safe. In some ways I feel like that over protective or overbearing parent that is always at school and trying to help in anyway I can and donate supplies when possilbe. I like to go to school when there is a special day like an ice cream social or I like to bring pizza for teacher appreciation day. What is odd is that I had never expected to be the only parent that goes to school for those special days. I have been to Hailey's school too many times to even count and I have NEVER seen another parent there at the same time. I know we have special circumstances where we only have so much time with Hailey and I want to make the most of it. When I think about it I don't know exactly how much time there is, but no body does. Even if I had all the time world I would still be at the school spending time with my child. Not to say that other parents should participate more, I know parents have jobs and other children and you should let your kids do their own thing and be independent, it's just something I think about. I am thankful for those opportunities and for Hailey's teacher for letting me be so involved. I hope she knows how much I appreciate that.

Once we get home we have Hailey set up for Summer School. I can't express how much this child loves going to school. Riding the bus is the highlight of her day, seeing her friends and her teachers puts a huge smile on her face. Summer school was only about 2 weeks long for her but she really enjoyed the time she went. The first thing she does when she gets off the bus and into the house would be to sit down and open her backpack to show me that she got a green light for the day. Then she'd put it aside to show dad when he got home.

One week into school, we notice Hailey is really tired. Her teacher even notices and lets me know Hailey is pretty lethargic at school. It was a muggy August and it was super hot. We had an upcoming trip to Washington to see Josh's family and we were hoping the cooler air would help. Still having my mommy senses buzzing I call her Neurologist in Utah and let him know that Hailey is always sleepy, and she is starting to walk slower. He said that maybe it's the weather maybe it's an episode, maybe it's the disease. He mentioned again that part of her disease is losing ability to walk and the possibility of her being wheelchair bound are very high. He says to keep in touch, go ahead on the trip and see how it goes.
We go to Washington and Hailey is walking on her own, slowly but surely. She isn't falling down or bumping into things, but that doesn't last long.
We were there for 5 days I think and when Hailey had an episode in the past it happens like 0 to 60, this is happening very slowly and I have to remind you she is still on steroids. All this time I felt in my heart steroids are what's helping...So why is this happening?
Josh and I believe this is the beginning of anther episode. We just had an episode, why is this happening so fast? It's not stopping Hailey though. She is still having fun and enjoying every minute of family and fun. I love this kids smile! (You will hear me say that a lot)

This was our first trip to VooDoo Donuts in Portland. We all pack up in the car and drove over for some super yummy donuts!

SMILE!!

Once we get home things just go down hill fast. Hailey is walking, still baring weight but I have to hold her up under her arm pits to make sure she doesn't fall. She is talking, she is eating, but not walking on her own. We talked to her Dr. and he advised to wean Hailey off the steroids. It was obvious they were not helping. It hurt my heart to do it, but I could see that they weren't helping.

When we were last hospitalized in June we had ordered a wheelchair/stroller for Hailey. We didn't get it until Sept 6th. We understood this is what her disease was and this was going to happen. I didn't realize a child in a wheelchair was going to be so challenging. I still wanted her to go to school and since she takes the bus I just thought that they would see she was in a wheelchair and adjust accordingly. The school busses wouldn't take Hailey to school in her chair since it wasn't written in her IEP. I asked when we could have that adjusted and I got the date of Oct 19th. Basically a month and a half later. I would have to take Hailey to school. We don't have a wheelchair accessible vehicle so I would have to wheel her to the car, carry Hailey to put her in the car seat, pack up her chair, put it in the back and take Hailey wherever we needed to go. Hailey is 52 pounds and half my size. Carrying her is not an easy task.
Slowly Hailey started to not want to eat as much as she used to. Then every time I would help her to walk her legs would shake like crazy before calming down. This was something new. I have never seen her legs do that. She also started to clench her fists and the eating had slowed even more. It was Josh and mine's 10 year wedding anniversary and Josh's mom came down in hopes that Josh and I would go away and have our day, but we couldn't leave. Well maybe I couldn't leave...my kid was sick.
I get a call into the neurologist and he calls me back pretty quick. It was a Tuesday. He started off by wanting to tell me that he got the test results back from the vanishing white matter disease blood test. He said it came back normal...BUT...you need to test 5 specific genes to get an accurate and true yes or no. We only tested 1 but it came back normal? Now what? Well, before we get to now what I interrupt and tell him about the walking which we understand is part of the disease but what do I do about the leg spasms? The conversation kind of went like this:

Me: These leg spasms are new. They are freaking me out.
Dr: I don't like hearing that. Can you bring her to Utah?
Me: How soon should I have her there?
Dr: I can have a room for her tomorrow at Primary Children's Hospital in Salt Lake.
Me: Guess we'll see you tomorrow...